Hitting my wall....

I said half way through this year that I couldn't wait to see the end of 2012.... But we're back at GOSH on New Years Eve, so 2013 is gonna start the same way this year will end....Shit. I know i should count my blessings Connor will be home for Christmas and just suck it up and realise i am lucky we get him home at all, there so many children who wont be able to get home but I hit my brick wall last Monday after 11 months and feel like I'm back at square one... Emotional, nervous, not sleeping, worrying, missing my girls and wanting our life back.
We spend 3 weeks at home all together before coming back to hospital last week, Connor was like his old self, laughing, full of energy, eating better and fighting with his sisters! his hair is all back and he gels it into spikes every morning, he did 3 mornings at school on his own and he enjoyed it so much, he loved getting his uniform on and walking into school with Ella, i will honestly admit it left me a nervous wreck and in tears constantly, half  because I was so very proud of him and how far he has come and how hard he has fought to get here and half because I envisioned all these awful things happening to him without me there to protect him....his Hickman line being pulled out, spiking a temperature or just crying for me,  I should never doubt Connor, he continues to amaze me. Whilst I was home I started potty training Lola, and we finally got the dog house trained , we had an emotional roller coaster few weeks and I just didn't want to go back to hospital.
But of course we're here.... Treatment is going well, Connor has started grading the nurses on how much his injections hurt him, he has dished out a few 1/10,s but refuses to cry, he clenches his fists and says "get through the pain" very dramatically which has us all laughing, the nurses say he looks great, the consultants are mostly happy with his progress , his treatment has been tweaked as he has had reactions and rashes but that's the "beauty" of  a drug trial I guess, no one actually knows the outcome of it, "trial and error" they say, it works for some and not for others... and we've had that fact made brutally clear this week .
I very rarely leave the room unless Connor needs food or a drink, he likes to know where I am all the
time and it suits me fine, I dont interact with many other parents because I just need to focus on Connor and in truth, it's hard enough knowing every other child on this ward has cancer of some kind, without listening to another parents heartbreaking story, because I just about keep it together as it is and whilst some people need support from others, I'm stronger on my own.
The nurses say I'm sensible to not get too involved, they say I'm a very capable and strong person and they say its normal for me to be anxious as the end of treatment nears. I know that im struggling because I've lived month to month with hurdle after hurdle to get over whereas now there are no more hurdles,no more bridges to cross we have to just wait and see if everything Connor has been through has been enough and I feel like I'm cracking a little bit more everyday ....I'm not strong or capable I just put on a bloody good show for my children because I have to protect them.
This week I've met 2 families properly after just smiling at them and making polite converstaion in
passing,one of a 18 month old girl whose leukaemia chemo isn't working,  they live 5 minutes from
us, we share the same doctors who also failed to pick up her symptoms... The other family has a 5
year old  boy who also has Neuroblastoma, he was diagnosed 2 months before Connor but never got
to the trial stage, he has relapsed in the brain, spine and liver, he is yellow, he is in constant pain and his mum told me today, there is no more treatment, he has at most 2 months to live.. He is in the room next to us, and its like looking my worst fear in the face. The similarities between us is unreal, both mothers of 3, of an older child, a 5 year old and a 2 year old, both living out of the hospital, missing our other children and our partners, I don't know what to say to her, she is devastated, and I am petrified  but she said to me today, dont be scared, it works for some and not others and she was happy for me, so happy for Connor because she said she feels at peacknowing all the treatment her son had wasn't in vain if Connor gets better and his treatment works, she wants it to work for us because it failed her son, and her fate is in gods hands....
Her words don't make me feel better, and I have no words to ease her pain, she watches me with
Connor, she looks so sad and she must be thinking why her son?? I look at her, and pray please not
mine.... I've seen with my own eyes how quickly this disease can come  back, how aggressively it can come back, there are no guarentees and I don't know if Connor will be ok



 I pray and hope everyday he will one of the lucky ones and despite what people think, when
our treatment ends, that's not the end of the nightmare, it will be a daily worry, we will be constantly looking over our shoulder.

The good days, the bad days, the ugly days ....

It has been weeks since i have had the chance to open my laptop and try and blog......
so much has happened, normal routine things, hospital things, fun things. upsetting things.... i dont even know where to begin and it would be a long and boring read in places..... i could start at the beginning when Connor finished his Radiotherapy, and finish it now... a few weeks into his last 6 month long stage of NHS treatment but i would miss something important and would only confuse myself as so much has gone on, i have scraps of paper in front of me that have dates and events on but my memory is awful and i cant read my writing in places, sometimes ive just jotted significant things down right before bed but i cant for the life of me remember in which order they should go and this blog is important to us.... so many people want to know how Connor is doing.... so after thinking about it carefully and talking it through with rik, my partner and childrens dad we have decided to start blogging pictures when we cant find the time or the words to do Connors journey justice....

The pictures are dated from April, hours after Connor recieved his life saving operation to remove his  tumour ...we call them the God, Bad and Ugly as some are hard to look at, some make us smile and some break our heart but all the way though Connor keeps smiling...keeps fighting.

On the 11th September our youngest daughter Lola was 2 and the day after on the 12th September Connor turned 5, early on we were not even sure if he would make it to his next birthday but he celebrated in style with all his friends and family, days later his last stage of treatment started, and even tho we were warned of possible side effects... it still knocked us on our arse to see him suffering again, raging temperatures, shaking, hallucinations, pain, tiredness, tears and allergic reactions to new medicines .....no matter how many good days u get the bad always rears its ugly head and reminds u its not over....

We did get the chance to go to Euro disney on the 12th October for a few days thanks to the Magical Taxi Tour, it was an amazing trip and Connor and his big sister Ella were treated like royalty, is a real treat after long periods in hospital to be able to be a normal family and get spoilt for a change...


These hospital pictures are a constant reminder to us that no matter how well Connor is doing, how well he looks, there is still a huge chance his Cancer will relapse and it is so important we keep fundraising and raising awareness of Neuroblastoma....will blog as many pics as possible tonight and then will post some happier pics of him over the next week before we are back in hospital.............God bless xxxxx

More busy days!

Connor started his Radiotherapy at University College Hospital London, 9 days ago...so far so good, he hasnt needed to have a general anaesthetic for the short time he has his treatment for instead he lies as still as a statue and watches a dvd projected on the ceiling, we are not allowed in the room with him but watch on a tv screen from the control room next door and we talk to him via a walkie talkie, our worries that he would find it scary were infounded even tho the huge treatment machine is like something out of a sci fi film but we treat it like a game and we now have walkie talkies at home!!

Before Radiotherapy started we managed to get away for a few days in weymouth again, we were sat on the beach on the day Ben Ainslie won his gold medal in the Olympic sailing, the kids didnt bat an eyelid at the 15,000 or so supporters at the far end of the beach but they did think it was funny when the crowd started cheering!

No rest for the wicked tho as the day after we got home treatment started at 9.00am, but Connor has again made us so proud as he just gets on with these very grown up situations. He loves the play room at the hospital, and he makes us get there even earlier so he can play the Wii before any other children come in.

We also had a meeting with our Consultant to go over Connors repeat test results... always gut wrenching but thankfully we got the news that his little body is still all clear and they are very happy with his progress, the word REMISSION was used but as most other families affected by NB know, this isnt always the way it stays so we are still fundraising and fundraising and fundraising to make sure if the worst happens we are financially prepared for extra treatment.
We still have a long way to go, over 6 months left before we can start to give him a break from hospitals, treatments and medicines, but as usual we are staying positive trying to see the light at the end of a massive long tunnel.

There is not much time left for other activities during the school holidays but we try and make the most of the few sunny days we have had in the garden at home, Ella is starting year 4 at school so the shopping for school uniforms has begun, as has Connor's as he is due to start reception this september , we dont know how much of a school year he will actually be part of but were hopeful he can have a few mornings getting to meet his teacher and class mates so it wont be so daunting when he is well and starting school properly.
Getting me to leave him at school will be a whole other battle!

We managed to get tickets to see Olly Murs at Kempton Racecourse yesterday thanks to some family and friends who pulled some strings to get Ella to meet him in person, he gave her a kiss, signed a photo and tshirt and even wore Connors wristband onstage!

And today Connor's specially made Dry-Suit came so after 8 months of staying away from water and having to be careful when his sisters are playing in our paddling pool, watching them having fun without him, he finally got to join them and the smile on his face and the screams of laughter ALMOST made up for all the stress and tears we have all shed since january.

Hopefully more fun, happy days will follow now the bad days are few and far between.

xxxxx

Home Sweet Home x

Connor finally got home on Monday 9th July, we have been so busy just enjoying all being together, getting back into a "normal" routine and fitting in hospital appointments that this is the first time i have sat down to let u all know how our little star is doing...... he is GREAT!, his spirits always soar when he is home with his sisters and all his blood results are up and improving as proof.

Its the little things that make all the difference, waking up together, having breakfast together, watching dvds on the sofa together... just being together helps erase some painful memories of Connor at his lowest.

 Its been a really difficult few months but we are finally seeing his little spark back and his energy is gradually building, his appetite - whilst still small is improving, and he is eating eggs for breakfast lunch and dinner, he missed being able to have them in hospital!! We are making fresh juice every day, have switched to goats milk products and are generally trying to get as much goodness in to his little body as we can, he isnt sitting still tho so is burning off so many of those precious calories!

We finally got to the cinema to see The Amazing Spiderman, and Ice Age 4, we squeezed in a long weekend in Weymouth before his repeat tests started this week... 7am at GOSH everyday!Were hoping to get back their again before Radiotherapy starts on 8th August.

All in all its been a crazy and tiring few weeks, this blog will have to be short and sweet as duty calls but we wanted to share some recent pics to show u how great Connor is doing and thank everyone again for their love and support xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Finally... Some positive news!

There has not been much to blog about these last weeks, Connor's progress has been slow but steady - he is no longer sleeping at all during the day, his meds have all been reduced and after a Particularly bad sickness day when his nasal tube came out I managed to persuade the doctors to leave it out for good, providing he showed he could eat,drink and take his meds orally within 24 hours, I knew he could do it and he is doing so well he is finally off his TPN ( calorie drip). The last week has been harder emotionally than it has been in a while, Con is very tearful and says a 100 times a day how he just wishes to be better, we have promised him he can choose anywhere fun to go when he is allowed home but just says, " I want to go to our house", it's really upsetting but even tho it's hard it is actually a good sign as when he is feeling unwell he doesn't complain about being here. I've lost count but I think today he has been here 6 weeks, but really even tho he had a few hours at home every day for a week after surgery he only slept at home once since then, so it's been closer to 11 weeks since we have all been home together properly. This weekend the girls came up and as the playrooms are still closed on the ward due to the flu bug still doing the rounds, the doctors allowed us to leave the hospital, yesterday we took Connor in his wheelchair for a little walk, and as he had a platelet transfusion overnight we were allowed to the local park today, Connor refused the wheelchair today,(another good sign). It is only a short walk but Con is really stiff and very frail but as soon as got to the park he wanted to play football with his new spiderman ball, he is too nervous to run without holding mine or Riks hand but he made a great attempt, it's heartbreaking to watch him, this cancer - the effects of chemo, has stolen so much from him, especially his energy and innocence but my boy is still fighting and what he lacks in physical strength he makes up for in spirit!! Rik kicked the football so hard earlier that his shoe flew off and Connor nearly doubled over laughing, a real belly laugh, it brought tears to my eyes, as he doesn't laugh like that much anymore. But even tho our life is so different now, that quick trip to the park did us all some good and gave me and Rik a little more hope - and walking to the park, all 5 of us, something we did day in and day out before, felt amazing and I was the happiest this afternoon than I have been in weeks. The next bit of good news is that the doctors have set next weekend as a possible leaving date, Connor is counting the days but I don't want to get our hopes, or his up too much, but I am hopeful and as its Riks birthday next Saturday, I couldn't think of a better present for him than to have Connor home....fingers crossed xxxxx

Little fighter x

Not much to report of last week as Con slept through the majority of it! The doctors started him on antibiotics and some other new meds as they suspected he had the beginnings of VOD, which is a condition a lot of the children going through High Dose chemo get, it causes the liver to distend and not function properly amongst other things, but they odviously caught it in time as we got the news today that they are expecting him to make a rapid recovery!!! He certainly hasn't breezed through this stage of treatment but I had built it up in to such a nightmare that it has definitely not been as horrific as I had imagined, my main worries were Connor ending up in Intensive Care an him being in agony with mouth legions, but he was so good at taking his meds and doing his mouthwashes 4 times a day that we managed to escape those particular horrors, and even his Mucusitus hasn't been too much for him to handle. Our son is such a little fighter, I don't know how he keeps battling through but I thank God( or whoever else is watching over him) for his strength, and we are so proud of him. Best news we have had in a while and a lovely present for Rik on fathers day! Means we will all be home together sooner than we thought however we will still be keeping our fingers and toes crossed as it won't be the first time we have gotten our hopes up. So it looks like the 4th weeks the charm. I even got to see my girls 3 times this week!!! Monday I took my daughter Ella to see Mamma Mia in London, we had a girls day with Riks sister Izzy, my cousin Alison and her daughter Lucy, they loved the show and we had great seats - only 4 rows from the front,they even got me to take photos of them with the cast after. It was lovely seeing ELla having fun, but it was hard saying goodbye at the hospital afterwards, i can't escape reality for too long. Wednesday I did the school run, made the girls dinner and gave them a bath, such normal things but it makes me so happy, sitting on the sofa watching cartoons cuddled up together gives me strength till the next time I see them, and the time went so fast, it wasn't long before i was back in the car and "swapping shifts" with Rik. Saturday I was home again and this time for the whole night, first time in weeks I had slept in my own bed and it was strange, my home is not my home, my home is Room 3, ELephant ward, Great Ormond Street Hospital, but I can't deny that a hot shower and waking up next to my girls has given me a much needed boost!! add that to the news that the worst is over with this round of treatment and my smile isn't forced today xxxxx

20 days:

It's been a week today since I last Rik or the girls, the longest I haven't seen my other half for in 12 years. I miss them all so much, we talk on the phone everyday but its not the same. I've attempted to write this new post 3 times but despite having ALOT of time on my hands while con has been sleeping so much, I just haven't been able to write anything and really I'm still not even sure what I'm supposed to write on a blog, I've never read one before, I imagine that they are supposed to be short, insightful, to the point, keeping people interested, my posts are rambling,sad and I go off on a rant sometimes. The intended point of the blog was to keep people informed of Connors progress but if I'm honest It's also a way of not having to deal with anyone, in 29 years I've become used to bottling every emotion up, i dont like discussing my personal life, i dont like people knowing my business, I don't like attention and my confidence has always been non existent, I still now find it hard meeting new people, and there a lots of new people in my life, those who are helping raise money for Connor just because they are decent human beings, lending their support because they heard Connors story and wanted to help. In this way the blog is a godsend because i can write things, that I would never say out loud and that includes thanking everyone on here, I can tell them how much it means to me, to all of us but face to face, i am useless, im not a "hugger" i dont like to "share my feelimgs" like they do in cheesey hollywood films, i never know whether to shake peoples hand and even then does that make me look cold? In truth the only people I am really affectionate with are rik and our children, I can never give them enough kisses, can never give too many cuddles, being away from them is a daily struggle, I wake up everyday with a achey feeling because I hear the sounds of a hospital ward not the loud noises of 3 happy children wanting to watch tv, or asking for breakfast, there is a saying - that u don't know what u've got till its gone but I knew what I had, i loved my life i didnt need a reason to start appreciating my family more. Getting back to the point:- Nothing major has happened in the last few days, Connors meds have just wiped him out, so I'm lucky if I get more than 4 hours to play with him each day, I am however pretty great at nearly all his computer games now, Con high fives me every time we reach a new level - thats all he wants to do when he is finally awake, that and operation. I reason that when he is asleep he is healing, and cant be in too much pain. I am myself only getting maybe 4-5 hours sleep a night and even then it's broken as Connors machines bleep constantly - letting me know that one drug is done, having another one start straight after, Connor waking up needing a wee,or him feeling sick, but somehow I never feel exhausted, in fact I lay awake until the early hours most nights willing myself to sleep but am wide awake, head full of worries. It's probably because i literally do nothing all day, just read, tidy up our small room, and walk the the short distance to the kitchen and back twice a day, I've counted the steps - 17 there and 17 back. At home when things were normal, me an rik sometimes used to count the hours till bedtime, so tired after a full day of work, school runs, housework, my body is used to being more active. The whole ward is on a kind of "lockdown", there is a nasty flu bug doing the rounds and none of the children on an Oncology ward need that extra worry, so the playrooms are shut, and there are posters on doors asking parents not to stand and chat in corridors or parents rooms as they don't want to run the risk of spreading germs. It's like a prison, but not in a bad way, I actually feel safe here, more relaxed even than when I am home, I know help is only a button away and our room is opposite the nurses station so I sometimes just poke my head out of the door if I'm concerned about even the smallest thing. I've watched Connor sleep more now than when he was a baby, and even back then it was a lot- ive been remembering how lucky we are that he is here at all, there was no cry when he was born, he was a dark blue colour and he had to be resuscitated due to the umbilical cord being around his neck, he was taken to neo- natal for 10 hours after his birth, I couldn't hold him and was worried we would not have the same bond as Ella and I, but as soon as he was placed in my arms, one look at his face was all I needed to know how silly that worry was. Looking at him asleep now, I can see how truly beautiful he is, he looks healthier than he has done in months despite what is going on inside him, his cheeks are less sunken,his hair has grown back a little and his eyelashes are full again- he always had eyelashes that would make a grown woman jealous! But there a few hairs on his pillow so I know it won't be long till he is a baldy again, he doesn't mind he says. I am hoping to see rik tomorrow, and my girls on Monday, I have tickets to see Mamma Mia with Ella, her last day of school holidays and the only day I will have gotten to see her, Monday will be a hard day so will be glad of a distraction, it will be the 11 th of June- exactly six months since COnnor got diagnosed, I can't tell you how fast it has gone, I know how much I've missed, especially of how much Lola has grown, in January she was 3 months into her 1 st birthday, on Monday she will be 3 months shy of her 2nd, I tell myself that Connor is the one who needs me more but as a mother, you can't help but feel guilty, it shouldn't have to be like this.

Jubillee week:

During those sunny days last week, I had the bright idea of using some of our wedding savings to book rik and our girls into a local hotel for the jubilee bank holidays, I thought it would mean less time spent in the car stuck in London traffic and more time together as a family, the girls love coming to see Connor and it brightens his day to see them. I should know by now our luck is crap. Sunday morning came, Ella was excited to see the hotel, it was only a holiday inn bless her but it had a small swimming pool so I knew she was really looking forward to it, and it was only an 8 minutes walk from the hospital - added bonus. By the time rik had driven up here, he was starting to feel ill, like he was coming down with flu at the same time I was told Connor had an influenza virus, so he wasn't allowed any visitors who were the slightest bit sick as he has no immunity to fight any germs, it also meant his sisters shouldn't come up, especially Lola, at her age she could be a carrier for a lot of bugs. It seemed pointless using the hotel,but although they sympathised with our situation they couldn't refund our money. So from Sunday till Tuesday we were round the corner from each other and had to stay apart, the weather was awful but the girls still managed to go to London Zoo, and Hamleys, they were also in the pool for hours everyday, so at least they had a nice few days. It is now Wednesday afternoon, we have had no visitors since Saturday, Con and I are missing rik and the girls like mad, Con has slept 16 hours a night and then for hours during the day so im at a loss as to what to do with myself,im so busy at home so used to having a routine that im struggling with all this time on my hands. I've read 5 books, spent hours googling every Neuroblastoma site i could find and when Con is awake we play Ratchet & Clank on his PS3 until he wants another another sleep. Apart from being so tired I think Connor is coping well with the effects of high dose, his mouth isnt too sore, he isn't using his morphine pump that much, we have weeks left for things to deteriorate but I'm hopeful.

Added stress!

Connor has been really unwell over the last few days, he is being sick even with the mixture of anti- sickness meds the doctors have prescribed, he won't eat or drink and just looks so sad all the time. Wednesday night there was blood in his vomit which the doctors think is the beginning of Mucositus, so we are literally waiting for the sores to start appearing in his mouth and then he can have his morphine pump back. We were warned this was going to be a really testing time that Con was going to struggle and we would have to tough it out but i cant explain how hard this is, feeling so useless and just waiting for signs when he goes further downhill. The only upside to this week was getting Connors story in The Sun newspaper, a double page spread of him in his favourite superhero costumes, I'm hoping it will do loads to boost Connors appeal and raise awareness of the awful thing that is Neuroblastoma, awareness of all rare childhood cancers. I popped home for a short time yesterday afternoon to do the school run, spend time with the girls and do normal things, make dinner, help Ella with her homework, but instead spent hours on the phone and writing letters to our local council, it makes me so mad that I have to waste my time on this crap!! To cut a long story short - our tenancy expired in the house we rent in March and with me not being able to work, and rik being self employed and sharing our time between home and GOSH, we cant afford to live there anymore, so after 8 years of renting privately, of paying other peoples mortgages, and moving 5 times since Ella was born, we decided enough was enough. Why should we struggle? why shouldn't our children have a permanent home? Our local council thinks differently - I have in writing that we are NOT a priority! Stress stress stress. Then there's bills to pay just to prove that life goes on even tho ours is falling apart. Weve also had to deal with people overstepping the mark and causing us personal problems, harassing family members who are helping at home with Ella and Lola, causing trouble between our two families, texting messages, how do people live with themselves? Isn't it odvious that we are all going through the most devastating and horrendous time and just want to be left alone, it's not like we haven't got enough to deal with! Last night i found a post relating to Connors appeal on a Music fan site, at first I thought WOW, word is getting out- great! but then I read more and it said this person was a family friend whose daughter babysits my children? Red flag alert!! My children have only EVER been babysat by their NANS or my sister. It went on to add that if they were having trouble donating to our charity site then they could donate via this persons PayPal and they would pass the money on! I couldn't help being suspicious so I emailed this person who then apologised for taking it upon themselves to embellish their relationship with us, but did it for the right reasons and just wanted to help, apparently no monies were ever received and they deleted the post. I initially felt bad as we have had so much support from strangers, people who have never met us who have given up their time to help us raise money, so this persons intentions might well have been honourable but in this day and age I'm well aware how many people there are trying to make a quick buck on the back of someone else's misery, and if I can't protect my son from the ravages of cancer and chemo, I will protect him from people trying to use his suffering as a money earner.

1 week down:

Connor started his Intensive chemo last Sunday, so we've done just over 1 week of a possible 6- 12 week stay at GOSH. Time has literally flown, and up until yesterday Con has been well and not too down. We had to swap rooms last night as our first was so hot and you can't open the windows here, sunshine beating in from 5am so today the blinds are shut save for a tiny chink of sunlight as Con was staring out of the window looking so unbelievably sad, u don't have to be a mind reader to know what he was thinking - he just wants to be home,playing out in the sun. Saturday he woke up and said "mummy my medicine today is to have lots of ice-lollys!!!" he isnt to know that the side effect of one of the chemo drugs is a mouth full of open sores, the ice-lollys help lessen the amount of drug getting into his saliva somehow, sunday was his rest day and the end of his high dose chemo. He was a bit down so his sisters came up to see him for the first time in a week, he had not got out of bed all day and within seconds he was racing them to the play room!! He had a lovely afternoon but when they left he cried for an hour. Today his stem cells were re-infused, we will know in a week whether it has worked and the healthy cells have grafted together, it only took a 10 min drip infusion but the stench it's left behind is still stinking out our room 9 hours later, and it's now eminating from Con, poor mite! Whatever the cells are preserved in smells exactly like an open tin of sweet corn but 20 times stronger! Today was also the return of his sickness and nausea another great side effect of the chemo, he won't touch any food and is hardly drinking. So hard watching him upset and unhappy, knowing there's sod all you can do to help him, i asked him today what would make him happier, help cheer him up, after thinking for 5 minutes he said " mummy I know what I want, it will make me really happy" I was expecting the usual heartbreaking answer - to just be better, but he said "I know u will say no?" I promised him whatever he wanted he could have, however much it cost I would get it for him, I just hoped it wasn't a real life transformer or something else that was impossible!! so he said " mummy I want a puppy, no actually I want 2 puppies a boy one for me, and a girl one for Ella and Lola" How can u say no to such an innocent little wish!! I couldnt! So mummy and daddy promised that when he is all better, he will get his wish, and after 4 long hours of us googling every breed of dog in the world, with the biggest smile he chose a Beagle for him and a Maltese for the girls!! So.... even tho I really don't like pets and am not very good with animals - It looks like our family is getting bigger xxxx